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CDCN Monthly Newsletter - September 2, 2015
Accelerating Research & Treatment for Castleman Disease
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      THE ACCELERATOR: CDCN's Newsletter

Wharton Community Enables Geonomics Study
 
Led by student leaders in the class of 2015, the Wharton Business school community rallied together to do their part to take down Castleman disease (CD). They raised enough funds to enable a high-impact study, "The Castleman Genome Project sponsored by the Wharton Class of 2015 and the Penn Orphan Disease Center", which will seek to elucidate the role of genetics in CD. The $63,000 study has the potential to uncover new diagnostic markers, treatments, and possibly even preventive interventions for CD, which is as rare as ALS. Multcentric CD is more deadly than lymphoma, prostate cancer, and breast cancer, because so little is known about how the disease works. In total, 200+ students and faculty donated funds to the campaign and over 3,000 volunteer hours on the CDCN leadership team. Please consider donating to the CDCN to help enable other studies waiting to be funded at https://secure.donationpay.org/castlemannetwork/
For more information on the Genomics study Click here.

Warrior of the Month: Kim Driscoll
'One family's continued fight in memory of their daughter Elyse'

Elyse was a beautiful, vibrant, energetic 13 year old girl who lost her battle to Castleman Disease in February of 2014. Elyse was diagnosed with Hyaline Vascular Castleman Disease in her retro-peritoneum in May of 2013. Prior to attempting a complete resection of her disease, she developed a disease known as Paraneoplastic Pemphigus which is an auto immune disease that is commonly caused by Castleman disease, in addition to sepsis and kidney failure. Since Elyse lost her fight against Castleman, her family has made it their lifelong mission to help continue the fight and find a cure.
This year they held their first ever annual 'Roar for a Cure" in Marborough, MA. This years benefit was able to raise over $4,000 dollars, which was donated to Castleman research. The Driscoll family has decided to channel their energy to continue to raise awareness and funds to help in the search for a cure. In addition to the annual 'Roar for a Cure', Elyse's family has come together in several different events in honor of their daughter and continue to bring awareness to a disease that is so unknown. Click here to donate in Elyse's memory.

Are you a patient or loved one? Ready to join the fight? It’s easy to become a Castleman Warrior! Please click here to learn more.

Important Upcoming Events:

  • Talk by Dr. David Fajgenbaum "Using Business Principles to Cure Disease: A Penn Med/Wharton Alum's Journey to Cure His Disease and Dozens More" hosted by the Wharton Alumni Club of NYC: November 9, 2015
  • Inaugural CDCN Gala and diagnostic criteria meeting in Philadelphia, PA: November 20-21 2015
  • "Beating Castleman's, Together" Patient and loved one Castleman Disease summit in Orlando, Florida: December 4th, 2015
  • Annual "Accelerating Research & Treatments for CD" physician and researcher meeting during ASH 2015 in Orlando, Florida: December 5th, 2015
Email info@castlemannetwork.org for more information about any of the CDCN's upcoming events.

 

Meet Our Managing Director of Communications:
Mary Zuccato:
Mary Zuccato is the CDCN's Managing Director of Communications and currently works for The Vanguard Group in Malvern, PA. Mary grew up next door to Caitlin Fajgenbaum and through their life-long friendship, met Dave. After learning of Dave’s diagnosis with Casteman disease and the launch of the CDCN, she wanted to do her part to help find a cure for this disease. Mary is passionate about raising awareness of Castleman disease, connecting patients and loved ones, and sharing the progress made by the CDCN. As the Managing Director of Communications she works with her team who is responsible for the CDCN website, search engine optimization, social media, and newsletter and always strives to engage the Castleman disease community. Mary graduated from Penn State University, where she received a BS in Communication Arts and Sciences. She is currently pursuing her MBA at Penn State University, graduating in 2016. Feel free to reach out to Mary by emailing mary@castlemannetwork.org.
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Copyright © 2015 Castleman Disease Collaborative Network - Castleman's Awareness & Research Effort, All rights reserved.


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